Head and Neck PUC Diagnosis

Hi RHS - I to have CUP liver and lymph node in groin and have also been told no prognosis until after 3rd chemo - just on my first as previous one reacted badly so starting again on Cisplatin and 5 FU (infusion via PICC line) if you search for CUP not PUC you will see more results - there are some very positive posts - far better than googling which is all gloom and doom about CUP

Hi @freddieQ ,

thanks for the tip - I’ll search on that. I’m at a very similar stage to you and am on the same treatment- for me it’s 96 hours of 5FU. I start again on Friday, but don’t feel very positive about it. As I type, I’m in hospital as l’m really breathless and the most likely explanation so far is the lung secondaries growing. That sounds very grim.

Hi. I’m sorry to hear about your diagnosis.

I was diagnosed in January with Cup. I had a lump in the groin and cancer in 4 sets of lymphs in different places around the body. 

The prognosis was 9-12 months and I was told chemo may help delay growth/spread but not cure it.  My consultant was quite negative and I was resigned to dying within 12 months. 

I’m 54 and had good health all my life.

Like you, I reached out to blogs like this and discovered several people living longer than 12 months.  I went onto Cancer Research UK to look at cancer trials. I got my consultant to put me forward for an immunotherapy trial at The Royal Marsden. I live in Manchester and travelled to London once every 3 weeks. At the first scan after 3 months, all 4 cancer sites had shrunk by over 50%. 

Unfortunately, the immunotherapy started to attack my lungs and had to come off the trial.  Although the drug stays active for up to 12 months after the last dose.

I am currently being lined up for another trial in Manchester called Hare40. This has had success in treating people with genital cancers but is now being trialled on those with incurable cancers.  I’m waiting for my results from my CT scan last week.  If the cancer is still under control from the immunotherapy then we will wait until the cancer starts to grow before going on the trial. 

You also have the right to ask for a second opinion with a different consultant in a different hospital. It’s worth doing this. I’ve dealt with 3 different consultants and they operate in completely different ways.

I know how frightening all of this is but things do get better with knowledge and understanding. 

Good luck on your journey. Happy to discuss further if you have questions.

Thanks

Peter

Hi PAJ

that’s really good to hear your story. Immunotherapy has been mentioned (and as I’m lucky enough to be treated privately, I understood that this option wasn’t available on the NHS). I intend to get a second opinion once I’ve had the results from my scan- I’m also interested in getting involved with trials so I’ll see what’s suitable for me.

You are right - knowledge is power. It’s the lack of understanding what’s happening to me and how long I have got left that is really troubling me. I’ve got two teenage children and it breaks my heart to think what they’re doing to have to deal with.

I’ll keep you posted on my progress (or lack of!)

Rachel